If you've coordinated post-acute care for someone in the past five years, how hard was it? (Poll Closed)

  • It was hard -- the biggest problem involved insurance or financial issues
    23 votes

  • It was hard -- the biggest problem was the ongoing coordination of the family and care team
    68 votes

  • It was hard -- the biggest problem was choosing the right providers
    8 votes

  • It wasn't hard to complete the referral and to coordinate care
    3 votes



  • Caregiver Informaticist - 7 months ago

    I have done this multiple times for family members and it's never a good experience. The most recent was with my sister, who went from acute care to LTAC 5 different times, back and forth, with absolutely NO coordination of care, although we were promised that one of her attending drs at the acute care hospital would be rounding at the LTAC AND that they held care planning meetings twice a week - neither ever happened. At one point I had to take the cell phone of the LTAC dr, and dial the other drs cell phone - and hand it back to him to force a discussion.

    And of course, absolutely no sharing of electronic data between the 2. The system at the LTAC was rudimentary at best, and I found the nurses didn't even know how to look up simple things like medication orders. They still used paper for most things.

    I will say the financial implications were also huge. After my sister died, her primary insurance carrier (she was employed full time when she got sick) and Medicare got into a huge fight over who was responsible - leaving over a million $ in bills unpaid. My niece and nephews were receiving calls from bill collectors constantly. We finally had to hire a law firm and threaten to sue the insurance company to get them to pay. And I can't even tell you the hours and hours we spend on trying to obtain accurate, itemized bills, reconcile everything, and hours on phone calls trying to talk to clueless people who could never help.

  • Mixed experience - 7 months ago

    I had to coordinate post-acute care for my spouse following 6 admissions over a 6 month period. 2 hospitalizations were at Johns Hopkins, which is about 200 miles from our home. The other admissions were at the nearby academic hospital where I am a physician faculty member. Our experience with Hopkins was excellent; our experience at my own hospital was consistently horrendous. At Hopkins, when I asked for a copy of the record of the hospital stay and the radiology image files, I was able to pick up a full print out of the records within 30 minutes of my call and in another location got an electronic file with all digital images in about an hour. At my own facility, I was only able to get a copy of the medical record after calling in favors from the director of health information management. Radiology images were easy to obtain but required two trips to the correct location, first to complete the request form and pay a fee, with a second visit 48 hours later to collect the files. Coordination of home health care was also a very different experience at the two locations. After the first Hopkins discharge, we stayed in Baltimore for a few days and had an initial follow up visit there. Everything went smoothly. On the second Hopkins admission, my spouse was discharged on home oxygen. When it became clear that the oxygen couldn’t be delivered to our home on Memorial Day, the discharge was (appropriately) delayed a day. The following morning, my spouse’s discharge paperwork was ready at 8 am, I stopped at the pharmacy next to the elevators and picked up medications, got my car out of the parking lot, pulled up to the front of the hospital where I was met by nursing staff who had my spouse ready (in a wheelchair) and several large oxygen tanks (with plenty of surplus) for the ride home. We had the cell phone number of the oxygen supplier, texted him when we were about an hour away and he met us a few minutes after we arrived home to coordinate additional needs. In contrast, upon all of the discharges from our own hospital, the discharge processes were invariably chaotic and delayed. Due to the delays, the appointments with home health care had to be rescheduled, in one case for the following day. (As someone with health care experience, I was able to juggle the home antibiotics overnight without difficulty but a less savvy family member would have been unable to do so.). On one occasion, the delivery of home antibiotics (which required refrigeration) was scheduled before the discharge arrangements were complete. Fortunately, we only live 10 minutes away and I was able to drive home, accept delivery of the antibiotics and then return to the hospital to collect my spouse. However, it is not unusual for patients at our hospital to live 60-90 minutes away, which would have been difficult to manage. On another occasion, the intravenous antibiotic prescription was inappropriately sent to the local CVS, where it obviously couldn’t be filled. Several other prescriptions were not sent to the pharmacy and others were sent incorrectly. (Here again, my knowledge of medications and how to reach the correct physician at the hospital after hours allowed a fairly rapid fix. However, this would have caused major problems for others.) Even during my spouse’s stay at our hospital, care processes were chaotic. Medication reconciliation introduced errors on several occasions and, once these were in the computer, the staff assumed it must be true and actually argued with us about the correct medications. We often had to ask colleagues for favors and on one occasion I had to drive home to get necessary medical supplies because the hospital had run out of a common but specialized product. Overall, our experiences at the two facilities were very different, demonstrating that health care delivery challenges abound but that good care coordination is possible even in a world of imperfect interoperability.

  • Britanny - 7 months ago

    My experience was different, we were transition into Hospice Care, it was on a Friday evening so once home and settled for the evening, which took considerable time, we discovered the required equipment was not delivered. Oxygen tank but no mask etc. Transportation from the hospital was delayed by several hours. The hospice nurses assumed they understood the family wishes so proceeded to insist on morphine and then after the administration of the med (there was no pain) continued to have it administered so he never really gained consciousness again. The providers could not agree among themselves the family wishes, it wasn't clear what insurance would cover, were told to go home on hospice and the cost would be evaluated on Monday. Not a good experience.

  • Clark D Jolkovski - 8 months ago

    I coordinated care through transitions from ICU to LTAC to SNF and home care with PT/OT and PCP providers. I could have easily clicked on any of the options as they all represent significant challenges that I encountered.
    But the absolute failure of systems to provide useful, accurate, actionable information to the next place of care was beyond frustrating. It was dangerous.
    I don't care if it is faxed, printed or sent by carrier pigeon - each system could not produce a document that reflected my wife's current condition. Meds listings were a dump of every drug used in her stay and clinical status was often 24-48 hours old when faxed/printed.
    Yes, interoperability is a good goal but current, accurate information at the time of transition should be the goal, regardless of data transport mechanism.

  • David Lee - 8 months ago

    Fragmentation, disparate systems and the use of fax machines to communicate continues to be a barrier to coordination of care.

  • Vicki Miller - 8 months ago

    I've worked to coordinate post-acute care for multiple family members and friends over the last few years. The most challenging aspect is getting the organizations to help patients find the right care for them provide the necessary information without significant follow up. This was recently most challenging when the patient's choice for home health was not the provider owned by the skilled nursing facility's owner. As we know, coordinating care is challenging when you understand the healthcare system at some level. We need to find ways to help those who don't understand the process get the right care for them that is not driven solely by the interest of the organization currently providing their care.

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